MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Expand/ Collapse Topic
 
Replies By
View Topic
jamieth29's picture
Replies 5
Last reply 8/4/2015 - 10:16pm
Replies by: stars, jamieth29, dfeng, DianaD

Well since my last post about my reccurance this is what happened. I had the surgeon look at spots which are many along my scar. He told me he thought they could resect them however when i went in for surgery this past friday he thought there looked like to many to be surgically removed. He biopsied 3 additional spots. 2 of the spots were negative and one additional spot turned out positive. He told me he could do the surgery but it would require a skin graft. I am afraid if i do the graft that it may just come back again. If I'm 3c unresectable i have access to pd-1. If its resectable then I'm looking at probably a 4 week recovery and then trying to get back into the checkmate 238 trial. I'm meeting with Dr Luke tomorrow and then a plastic surgeon at UC. I hate the thought of leaving cancer on my body if its resectable but that may be my best option to get to a pd-1 sooner than later. I have a pet/ct scheduled for Thursday so the smartest move in my opinion to see what the scan shows...if my body is still clear then maybe go for the resection. I'm struggling big time with the stress. i just wish i had a clear path. The in transit spots keep popping up fast along almost my whole incision. They are very small but obviously a big problem and im worried they are a sign that my cancer is really aggressive. Very nervous about pet on Thursday. I need a doctor to give me a path and just say this is what we are doing and that's it and hopefully it meshes with my opinion. Thanks for the opinions and guidance from everyone here and good luck to those of you having a tough time right now. The last 2 weeks have kicked my ass emotionally and i have to get out of this funk!

Jamie

Login or register to post replies.

Christine.P's picture
Replies 5
Last reply 8/4/2015 - 12:19pm
Replies by: Julie in SoCal, dfeng, stars, ldub, Anonymous

I have a large melanoma on my right calf about 2 inches above my ankle and the excision will need to be about 3x3 inches with margins. My surgical oncologist anticipates a skin graft and I really nervous about the healing process. I believe it will be a split level graft because the graft will come from my thigh.

While I don't want anyone to sugar coat anything, if you just have horror stories that aren't typical, please don't share them; I'm already scared.  (Not that anyone would intentionally scare another cancer patient; I am just easily upset and quite queasy about these things....)

I guess I want to know about healing time, pain levels, post-surgery care of both the donor site and graft site.  

Thanks for your help and advice.

 

Christine P. 

Login or register to post replies.

Hi, there- 

I just wanted to check in with you and see how you are doing. I think your CLND was scheduled for this past Friday.

Thoughts and prayers - 

Sheila

Login or register to post replies.

RaquelP's picture
Replies 8
Last reply 8/4/2015 - 9:50am
Replies by: RaquelP, jpg, Ed Williams, Anonymous, arthurjedi007

Has anyone progressed on Keytruda and now has moved on to Opdivo? Wondering if anyone has moved on to Opdivo with success and if insurance approved it.

Login or register to post replies.

akamo's picture
Replies 10
Last reply 8/4/2015 - 10:34pm
Replies by: jvictoria, DianaD, Anonymous, Millykamp, akamo, Janner, stars

Hi. My husband was just diagnosed with stage 1A melanoma, .33mm.  Dermatoligist scheduled him for wide excision and sentinel node biopsy. I have done a ton of research and everthing I have read recommends not to have the sentinel node biopsy surgery (.33 not in the guidelines). The biopsy of the melanoma came back with clean margins. Please can anyone help with this decision?

Login or register to post replies.

MarkL's picture
Replies 6
Last reply 8/3/2015 - 9:33pm

Just got diagnosed for second time with melanoma of the scalp (amelanotic melanoma).  Had my first episode in 2010, with WLE and no adjuvent treatment.  That tumor was .74 mm deep.  Latest tumor is 2.15 mm deep and near original site of melanoma.  Excision margins will be too wide for primary closure so skin graft will be required.  Not looking forward to seeing it on the top of my bald head but cosmetic concerns are secondary.

Big question is whether to have sentinel node biopsy.  PET/CT scans are clear.  Sentinel node is in parotid region so afraid of damage to facial nerve and parotid gland.  Would love to hear from anyone who has had lymph nodes removed from this area. 

Thanks,

Mark

Mark

Login or register to post replies.

LaurenE's picture
Replies 6
Last reply 8/3/2015 - 6:44pm
Replies by: Ed Williams, Anonymous, Joe.Pro, Bubbles, Johnjk04, dfeng

Hi, I'm hoping to hear more from those out there who have gone through the combination ipilimumab and nivolumab treatment, either on trial or through expanded access. Has it worked for you? Did it not work? What side effects gave you the most problems - and what helped you through treatment?

My dad is going to start this on August 18th. He'll be traveling for the treatment and staying with me in Ann Arbor, MI each time and I would appreciate any information and insight in order to prepare myself. Thank you in advance!

Login or register to post replies.

Mat's picture
Replies 25
Last reply 8/4/2015 - 10:20pm

Met with my neurosurgeon on Monday morning and was directly admitted for surgery.  Surgery will be followed by Cyberknife and I'll also be scanned for other progression.  Will report back.

Login or register to post replies.

casagrayson's picture
Replies 5
Last reply 7/31/2015 - 9:19pm

For those of you who have been diagnosed with lung mets, was it found on a simple chest xray, or was a CT or PET scan the thing that caught it?  

Strength and Courage,

Susan

Login or register to post replies.

Community oncologists say the drug-price control recommendations by 118 cancer doctors that made national headlines last week are misguided because most of the doctors behind the suggestions work for large, teaching hospitals where cancer care is more expensive than at cancer clinics. Drug makers also criticized the recommendations for singling out drug prices, which account for about a quarter of cancer treatments and 1 percent of health care spending overall, and the Pharmaceutical Research and Manufacturers of America highlighted the patient-assistant programs that drug makers offer, although Gilead, which makes the hepatitis C medications that rekindled the drug-price debate, recently limited its patient assistance program.

 

 

Last week, the group oncologists published recommendations for reducing the high cost of cancer drugs in the journal Mayo Clinic Proceedings. The recommendations include many of the controversial proposals that have been around for more than a decade, such as letting Medicare negotiate drug prices, allowing drug imports and banning so-called pay-for-delay settlements between brand and generic drug makers.

 

Unlike PhRMA, Community Oncology Alliance Executive Director Okon said it's right-minded to work on policies that would lower drug costs, but he said doctors working at institutions with high cancer care costs should lower their own costs before criticizing others.

 

"My line here is 'Physician, heal thyself," Okon said.

 

Most of the doctors who endorsed the recommendations in the journal are employed by large teaching institutions, many of which receive 340B drug discounts, and nearly 30 percent of the signatories are employed by a small group of hospitals where cancer care is high even compared to teaching hospitals, he said.

 

There are 11 hospitals that Medicare reimburses based on their reported costs, instead of paying them like all other hospitals based on a predetermined amount for the clinical classification of services they provide. The Government Accountability Office reported in February that these 11 hospitals charge Medicare higher prices to treat cancer patients that aren't much sicker or more complicated than patients treated at teaching hospitals that are reimbursed based on the Medicare fee schedule. Based on data from 2012, the most recent available for the study, GAO found that Medicare would have saved $500 million had reimbursement for those hospitals been based on the prospective pay system that determines pay for all other hospitals. Of the 118 oncologists to sign the recent journal article, 34 work at one of those 11 cancer hospitals.

 

Okon said the 340B drug discount program drives up drug prices because discounts are never free. Independent outpatient oncology practices are not eligible for the 340B Program. The discount program gives hospitals the incentive to overuse expensive drugs, Okon said, and a recent GAO report supports that position. He also believes the discounts are drying up the market for generic injectable cancer drugs.

 

Okon said streamlining FDA drug reviews would create more competition, and the House-passed 21st Century Cures Act would be a good start. Rather than attack drug spending by itself, the Community Oncology Alliance supports H.R. 1934, which would create an Oncology Medical Home demonstration. The bill is cosponsored by Reps. Cathy McMorris Rodgers (R-WA) and Steve Israel (D-NY).

 

"Rather than isolate the 20-25% of cancer care costs attributed to drugs, we are targeting at least 75-80% of cancer care costs," Okon said in an email. "Additionally, by keeping cancer care in physician-directed community cancer clinics we are controlling costs more than anything that can be done to just control drug costs."

 

PhRMA also criticized the Mayo Clinical Proceedings commentary. The proposals in the journal would stop drug companies from inventing drugs and halt decades of progress in cancer care, the drug lobby group says. Cancer drugs represent a small share of overall health care spending and plans already often restrict the use of oncology medicines, PhRMA adds.

 

"This violates the basic purpose of insurance, and is why improving coverage for medicines needs to be a top priority for policymakers," PhRMA states. "At the same time, we continue to work directly with patients to help them get access to the medicines they need."

 

However, the Wall Street Journal reported that Gilead recently restricted its patient access program because it believes plans are taking advantage of it by denying hepatitis C medication to patients, which in turn has forced patients to enroll in Gilead's patient assistance program.--John Wilkerson

Login or register to post replies.

stars's picture
Replies 11
Last reply 8/3/2015 - 11:06am

Hi

Having my third WLE tomorrow, 1cm margins for stage 1 melanoma on my chest, about 5cm below my collarbone. Am bummed to have a mel on my trunk, I prefer them as far from my head/neck as possible. Am worried this one is going to make it tricky to wear e.g. v-neck tops. The 2mm excision got the whole mel, so hopefully the WLE pathology result will have no surprises. I  need to pin my doc down on what other moles she wants to biopsy - she mentioned 'a few' but I have no idea which ones she means as last time I queried this she only mentioned one, on my back. I really need to get all necessary cutting and path done so I can get on with life, it's just been weeks now of biopsy, excision, re-excision and now mention of 'a few' more. I'm changing up to a derm mid- August so hopefully I'll get more definitive (as in, not having to always go back for one more biopsy) care there. I've been working fulltime the whole time and I really, really, really want to get back to a somewhat normal life without spectre of biopsy/pathology hanging over me. I know WLEs are no big deal but I don't enjoy them one bit and feel a bit panicky before and during. Wish me luck,

Stars

Login or register to post replies.

DianaD's picture
Replies 5
Last reply 7/31/2015 - 4:46pm
Replies by: DianaD, stars, arthurjedi007

It's a long story and complicated, so I'm only going to provide a high-level summary here.  I received a diagnosis of liver disease today, of unkown cause.  I'm being referred to the hepatic clinic at the University of Michigan, where they have a world-renowned hepatic specialist.  It probably takes a long time for an appointment with her, so the goal right now is to get me into the system and seen by any of the doctors there.

Separately, I have two ugly, non-normal looking moles on my back, with all of the ABCDE characteristics.  My GP 's office is making an appointment for me at U of M for that, too--they are going to try to get me into the melanoma clinic, but if that's not possible, they will make the appointment with dermatology.  U of M dermatology biopsied my moles and performed a second excision of a dysplastic mole on me ten years ago, and it took a long time to get an appointment, so today I referred myself to the University of Chicago's dermatolgy deparment, using their on-line appointment request.  I received a message saying that someone would call me within 24 hours.  

Whichever medical center gives me the first appointment will do the biopsy, and I'll use the second medical center for a second opinion, regarding the pathology report and any recommended treatment.  

I'm hoping that I don't have melanoma with metastases to the liver or liver cancer.  Another possibility is that my immune system is attacking my liver (and kidneys--my kidney function is barely in the normal range).  I have Sjögren's Syndrome, which in the most serious and severe form, the immune system attacks the body's vital organs or systems.  There is no cure.  They use a chemo drug in the hope that it will slow the process down and in the hope that the patient can tolerate the treatment. 

The best case scenario is that the meds that I've been on for six years for my autoimmune disorders (I have four disorders) caused the liver damage, and now that I'm off all meds, my liver will heal.  That could take a long time--years, and my liver function may never go back to the level of functioning that I had.  

The worse case scenario is that the liver disease continues to progress, ending in liver failure and death, unless I receive a liver transplant.  

Melanoma and/or any other cancer are also worse case scenarios. 

Thank you for "listening."

 

DianaD

Login or register to post replies.

cbeckner98's picture
Replies 4
Last reply 7/31/2015 - 11:11pm

Hi all,

I've written a few times - my Dad has stage 4 cancer in his brain and lungs and went through a course of whole brain radiation in late June.  Since he is BRAF negative, he just had his first dose of Keytruda/Pembro on July 20th - after tapering from steroids in early to mid-July.  In any case, he has been extremely fatigued since and has lost almost 15 lbs in the last two weeks (since everything tastes metallic and/or makes him nauseous).  Given all of this, has anyone had luck with the non-steroidal appetite stimulants?  Has anyone tried Dronabinol/Marinol (a version of marijuana)?  For those of you taking immunotherapy/anti-PD1 drugs after steroids, how long did the effects of the steroids linger on?  I would appreciate any recommendations on food which tastes good - beyond watermelon and pineapple, he isn't eating much (and no protein).  I'm worried that they are going to have to put him on an IV if he doesn't start eating and gaining back some weight.

Also, he just had his first post-radiation MRI on his brain today - 2 tumors were the same, 2 tumors were a bit smaller, and one bigger tumor in the frontal area increased in size.  Disappointing...  We are still holding out hope that Keytruda will make a difference - finally hoping for some good news in the midst of this!!!

Thank you as always,

Carrie

Login or register to post replies.

Millykamp's picture
Replies 18
Last reply 8/4/2015 - 10:47pm
Replies by: jvictoria, Millykamp, Mrs.GL, DianaD, stars, Anonymous, dfeng, JoshF

I have been having mixed emotions the last few days.. I try talking to people,about it but I don't want them to think I am one of those people that is overreacting on something that is nothing. I lost my dad to cancer when he was 38, pretty much lost half of my dad side of the family to cancer.    Now that I am 37 and found out I have melanoma the past few weeks has been nothing but biopsy, and more yet to come.  along with upcoming wide excision and SLNB.   I know my cancer is nothing to worry about.  But it's always on my mind.. I guess I am scare of not knowing what to expect.       I am just curios.... Do people ,ever get those days where you just wanna have a big hug and just cry???

 

i am so glad I found this site and glad to see people' from around the world just come together and support one and another .    Thank you!!! 

Melissa 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 9
Last reply 7/30/2015 - 3:39pm
Replies by: Millykamp, Anonymous, Kim K, stars

Hi 

I was just diagnose with Melanoma 2 weeks ago and is being sent to see an oncologist  at the university of Michigan in a few weeks and already know I will have to undergo surgery to re excision and sentinel lymph node biopsy 

i am not sure what I am. So confusing..  here is my report ::::::

Malignant Melanoma  invasive to Clark IV, Breslow depth 1.33 vertical  and T2a

nudular type 

ulceration is absent 

mitoioc rate is 8 

tumor regression is equivocal

 

 

So does this mean I am a stage 1a or am I stage 2a?    How was the sentinel lymph node biopsy I read mix view on it, reading it painful and burns.  I have been told I will be sleeping the whole time.  I am just overwhelm.... 

Melissa 

Login or register to post replies.

Pages